World Down Syndrome Day {I heart Charlotte}

by GfG on March 21, 2014 · 2 comments

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I love children.   I’m grateful that my life has been filled with wonderful opportunities to interact with all kinds of children. I haven’t had a typical life as far as that is concerned.  It has changed my heart, my mind, and my perspective.

Faith and Charlotte faces

My dad introduced me to the opportunity of working with people with special needs.  Every year, he ran an area at the Special Olympics where kids could learn how to cast a rod and reel, aiming for buckets.  It was great.

In high school, I participated in Interact and the sponsor was a special education teacher.  I’m so glad.  Because of her, I worked with children who had developmental disorders of all kind at a yearly picnic and more.  I think it planted the seeds for my degree (education for the deaf).

During my years as a special ed teacher, my years volunteering at different events, my years working at a camp for physically disabled and then my years at a camp for kids with learning challenges, I naturally had opportunities to interact with children and adults with Down Syndrome.

I can not imagine a world that refuses to value children with disabilities or differences, including Down Syndrome of course.  I know there are cultures that don’t, but I still can’t wrap my head or heart around it. It stuns me.

Today is World Down Syndrome Day.

In celebration of individuals with Down Syndrome and as a way to give them, their families, their friends, and their advocates a platform and/or a voice to share about the beautiful contribution to society people with Down Syndrome are, World Down Syndrome Day was created.

Why is World Down Syndrome Day necessary?  Because they world has become a scary place for those with disabilities in the Western world, especially those with genetic ones that can be detected in utero.  While that has been true in some areas of the world for quite awhile, it hasn’t been true of the West.  Now it is.

Not only are their lives at risk before birth (more than 90% of mothers who get a Down Syndrome diagnosis in utero abort the child!), but their lives are at risk at all stages.  Things that I can not fathom are happening and we have to shout loudly that disabilities do not designate devaluation!

Our world is actually made better by having all kinds of people, including those that don’t develop at typical rates or in typical manners.   Including those with Down Syndrome.

About Down Syndrome (from the National Down Syndrome Society site):

Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21 (Down Syndrome Day is on 3/21 to point out the 3 copies of chromosome 21).

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year.

I have a dear friend who was surprised at birth by the diagnosis of Down Syndrome for her precious Charlotte, baby number four, two years ago.  It was staggering in adjustment, of course.  And it’s scary.  And it’s overwhelming.  And it’s non-typical.

But Faith will tell you that Charlotte is a beautiful, beautiful creation.  She has changed their family for the better.  She has brought a higher level of compassion.  She is valued and valuable as a person.

Ri and Charlotte reading

I can’t imagine Faith’s life without Charlotte.

Faith and Charlotte hair

And I want everyone to know that Down Syndrome does not mean a wasted life.

Instead, it means a life that glorifies just as much as other lives.  If not more so.

So… I will wear some crazy socks as a way to draw attention to today.  And I’ll talk about Charlotte and Down Syndrome to everyone who asks.

Here’s a fantastic blog post for you to read written by a mother with a daughter with Down Syndrome. She speaks from the heart and she speaks bluntly.  Two of my favorite things.  Be blessed by her post!

Your Perception of Down Syndrome

What we are Really Celebrating: another great post (super short) that explains why this day is important (one instance of foul language, but worth it)

Janelle and Charlotte 3

Here’s to World Down Syndrome Day and all the individuals given platforms and/or voices!

And here’s to the one who has made it personal for me, Charlotte!

World Down Syndrome Day

 

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